Empowering Patients and Caregivers
When you or a loved one receives a cancer diagnosis, your whole world stops.
For most of us, it’s not a conversation we expected to have, wanted to have, or are prepared for. Suddenly, you are called upon to learn the nuances of a disease that you may not have ever heard of to make potentially life-altering decisions about your care. You get referrals to new medical specialists to clarify your treatment options.
You upend your routine and your family’s routine to schedule appointments, tests, procedures, and treatments. You face the daunting challenge of who to tell, and how to tell them.
Following a cancer diagnosis, empowering patients and caregivers includes bringing together the information to understand your specific diagnosis and your options, finding the medical team that is right for you, rallying the emotional support to face your diagnosis, and calling on the social support to keep your life and your family’s life going.
empowering patients & caregivers
Cancer diagnoses rates continue to rise in America1, especially in communities of color and lower income populations where lower cancer screening rates result in diagnoses at later stages when treatment is more complex and less effective2.
In the Spring of 2021, the CDC Foundation launched the Empowered Health Cancer-Free Challenge, a call for ideas centered around the question: How might we empower one another to prevent, treat, and beat cancer?
The Challenge began with a needs assessment3 that gathered perspectives from four groups; health care providers, cancer patients and survivors, caregivers, and members of the public. The characteristics of empowerment included:
In control, knowledgeable, well informed, confident, motivated, self-aware, and open-minded
Power and ownership over one’s health
Having the tools and resources needed to manage one’s health
Shared decision-making with providers
Effective communication with providers, not “feeling rushed”
What if we accelerated broad access to the rapid innovation occurring in cancer care, gave patients and caregivers plain language tools and resources for shared decision-making, and partnered across the cancer organization ecosystem to bring together information and services that address the well-being of the person?
At Rabble Health, we aim to help cancer patients and their care teams manage through cancer better. Our purpose is to help cancer patients, their caregivers, and their care teams have greater control over the decisions and actions impacting their care - the definition of patient empowerment.
Our approach extends beyond clinical care, partnering to bring together services that address the logistic, financial, and legal impacts of a cancer diagnosis. We have launched our direct-to-patient platform, myRabble, providing a platform for advocacy organizations to reach more patients, aligning economic incentives across life science partners, and serving as a platform that commercializes evidence based research regarding patient reported outcomes, cognitive behavior therapy, and implementation science.
We offer patients continued control and ownership of their cancer journey story and data that is independent of any provider, institution, insurer, or clinical trial.
We responded to the Empowered Health Cancer-Free Challenge, and were honored to be one of the Top Idea grant recipients. We continue to listen to patients and caregivers to understand and address their needs and to partner with organizations who also seek to put the needs of patients and caregivers first.
References
Centers for Disease Control and Prevention (2020). United States Cancer Statistics. Data Visualizations.
https://gis.cdc.gov/Cancer/USCS/DataViz.htmlNational Cancer Institute (2018). Cancer Statistics.
https://www.cancer.gov/about-cancer/understanding/statisticsEmpowered Health Program: Needs Assessment – Topline Report
https://drive.google.com/file/d/1W8SFhDW8d45MUbDEmyTnWr0nI-jxoG1Q/view
